Public and patient engagement is becoming an established part of academic research, and funders increasingly require that citizens and patients are seen as research partners rather than merely as research subjects. Yet many researchers question what this means in everyday research practice.
An interview-based study conducted at the University of Eastern Finland examined this question from the researchers' perspective. Researchers from two Finnish universities described their experiences of, and expectations of, public and patient involvement.
The findings focus on power relations between researchers and patients as something that varies from one context to another.
"In the literature, researcher-patient relationships are often presented as if they were fixed arrangements," says Postdoctoral Researcher Eeva Aromaa. "Our study shows that this relationship is more dynamic, especially concerning power."
The analysis addresses three forms of power identified in earlier research: power over (control), power to (enabling agency) and power with (shared decision-making). In researchers' experiences and expectations, these power relations appear in parallel.
The parallel nature of power relations became visible through three tensions.
The first tension concerns the difference between tokenistic involvement and co-creation. At times, patients are invited to comment on plans that are already largely defined. In other situations, researchers make space for patients' ideas or shared decision-making. This requires flexibility from both parties but may also cause a discrepancy of expectations.
The second tension relates to institutional structures and everyday work. Funders encourage collaboration but reporting requirements and tight timetables sometimes mean that researchers' direct engagement with patients is replaced by representation by a patient organisation. This may reinforce hierarchies, even when equality is the aim.
The third tension arises between conflict and reflexivity. Patients may question the roles that researchers assign to them and the priorities of the research. This can reproduce hierarchy, but it may also prompt reflection among researchers concerning power relations.
Professor Päivi Eriksson highlights the significance of the findings: "Researchers constantly navigate between different expectations. Attention to power relations and their outcomes helps to build capacity to collaborate with patients in research."
According to the study, patient involvement does not mean eliminating power. What matters is recognising when and how power relations operate.
Published in Health Expectations, the study was conducted as part of the CO-RESEARCH project funded by the Research Council of Finland and was published in the Health Expectations journal.
